Thursday, April 14, 2011

The Kiddos, Part 2

Simon has one month left of his first year of preschool. On the whole, it has been a good year, and he has enjoyed going to school. After much deliberation, we made the difficult choice to not reutrn to the same preschool next year. The beloved 4-year old teacher is leaving after so many years at the school, and she was really the incentive behind my willingness to stick it out for another year (it's a bit of a drive). We toured a Christian preschool closer to home that some of our friends' children attend and have decided to make the switch. Simon seems to accept this decision without any complaint. Although he likes preschool, he has not made any "best" friends there and does not seem particularly attached to the school. I am sad to say goodbye forever to the school becasue Jamie did have such a great experience at this school, yet at the same time, I am not sad to say goodbye to the drive and the craziness it adds to our schedule. I am all about simplicity (especially with a new baby on the way!).

Violet has had a rough six weeks with illness. We were all sick with a cold at the end of February. However, Simon, Violet, and I could not shake the cough and congestion. Both Simon and Violet ended up with ear infections, and I came down with bronchitis. By the time I brought Violet in, her ears were so infected (as in pus bubbles ready to pop! ewwww... gross!), that the goop was coming out of her eyes because there was nowhere else to go. So the doctor started Violet on a course of augmentum before things got worse. Unfortunately, we now know that Violet shares her dad's and older brother's amoxicillin allergy. She ended up in hives from head to toe. As soon as I saw them, I knew instantly what they were from (having dealt with the same thing with Jamie when he was two). Since Violet was on day eight of the antibiotic when she broke out in hives, the doctor felt it was okay to not prescribe a different antibiotic, but absolutely stop the augmentum. Two days later, Violet's hives became worse, her breathing was slightly labored, and her face was starting to swell, so it was off to ER. She still had a double ear infection, so after some monitoring and oral steroids in the ER, we were sent home with prescriptions for more steroids, bendaryl, pepcid (apparently an antihistamine as well) and zithromax (another antibiotic). A week later, we followed up with the pediatrician again. Violet STILL had a double ear infection. And she still had the horrible rash from the allergic reaction. I think she was more miserable from the rash than the ear infection. She needed benadryl at night to go to sleep because she was scratching herself until she bled. Not to mention that antibiotics cause diarrhea, so now I was pumping her full of probiotics as well, and we had to add a medicated diaper cream to the mix. So now Violet was put on omnicef, a third antibiotic. Unfortunately for Violet once again, there is some cross-sensitivity and 10% of people allergic to amoxicillin/penicillin are also allergic to the class of drugs that omnicef is in. Violet's reaction was not as severe to the omnicef, but her rash worsened. She completed her course of medication, suffered through the rash, slept on lots of benadryl, and I think we're in the clear now! Everyone has been healthy for a couple weeks now. (Oh, I better not have just ruined anything!)

We are all looking forward to spring, Easter, Simon's birthday, and Jamie's First Communion!

2 comments:

Hi thankyou for having a blog I've looked high and low to find someone who had a child with ws I was lucky to find some on facebook but non on blogot. My daughter is 3 and we just got the diagnosis is March. It is very new to us although her infancy wasn't the easiest. I'm excited to read more

About Us

Married to my college sweetheart Shawn for 14 years, we have six children - Jamie (11), Clare (9), Simon (7), Violet (5), Eliza (3), and Cecily (1).
Our second child, Clare, was born with a rare genetic condition, Williams syndrome, severe congenital heart defects (pulmonary stenosis and aortic stenosis), a Chiari Malformation, mid-aortic syndrome, and kidney issues. She has undergone one open heart surgery and ten cardiac catheterizations to repair her cardiac and vascular defects and has also undergone a frenulectomy (tongue-tie release) and an angio-embolization of her radial artery to repair an A-V fistula and aneurysm. On May 1, she had her longest surgery yet - a bypass graft of her abdominal aorta, a bypass graft of her SMA vessel, and a kidney re-transplant (kidneys transplanted elsewhere in her body).
I began this blog when Clare was an infant to chronicle our life on this new journey into Williams syndrome and raising a child with special needs and a chronic heart condition. As our family has grown over the years, now it more details our life as a large Catholic family (while raising a child with special needs and a chronic medical needs)!

Our Children

Jamie, age 10

Clare, age 7

Simon, age 5

Violet, age 4

Eliza, age 1

What Is Williams Syndrome?

Williams syndrome is a rare genetic condition (estimated to occur in 1/10,000 births) which causes medical and developmental problems. Williams syndrome was first recognized as a distinct entity in 1961. It is present at birth, and affects males and females equally. It can occur in all ethnic groups and has been identified in countries throughout the world. Williams syndrome is caused by a spontaneously occurring deletion of 20 genes on chromosome #7, including the gene that makes the protein elastin, which provides strength and elasticity to vessel walls. The heart and blood vessel abnormalities are caused by this lack of elastin.

Most young children with Williams syndrome are described as having similar facial features. These features include a small upturned nose, wide mouth, full lips, small chin, and puffiness around the eyes. Blue and green-eyed children with Williams syndrome can have a prominent "starburst" or white lacy pattern on their iris.

The majority of individuals with Williams syndrome have some type of heart or blood vessel problem. Typically, there is narrowing in the aorta (producing supravalvular aortic stenosis SVAS), or narrowing in the pulmonary arteries. There is a broad range in the degree of narrowing, ranging from trivial to severe (requiring surgical correction of the defect).

Individuals with Williams syndrome have a very endearing personality. They have a unique strength in their expressive language skills, and are extremely polite. They are typically unafraid of strangers and show a greater interest in contact with adults than with their peers.